Saturday, 24 July 2010

I know lots of bloggers cover this, but it is quite a vital topic - the dos and don'ts of dating with arthritis.

So, I went on a date last night for the first time since my diagnosis. It was a blind date, which weirdly I would never have done before RA. The last few months since I stopped wallowing in depression I've gone the opposite way by doing EVERYTHING I want, ALL THE TIME. I'm just afraid that the clock is ticking and I won't be able to do things soon, so I've gone a bit mad basically. I spend lots of money because I don't care about 'planning for the future' anymore, I've been on about 3 holidays already this year and now apparently I go on blind dates with strangers. I wonder what's next?! Must be some weird stage of grief I'm going through..but it is better than crying every day which I used to do. Anyway, I digress.

The date actually went really well, we went to a few pubs and got VERY drunk. I was actually drunk before I even got there because I was really nervous, I couldn't finish my dinner and drank half a bottle of wine.

I think we might see each other again, so here come the problems. When do I drop the RA bomb? "Yes, I might be the fun lovin gal you're looking for, but how do you feel about my fun disability?"

I know that if the person is decent, they won't care about things like that. But it's still kind of a weird issue, if you mention it too early it might be a bit too 'serious' but if you leave it too late then it's like you're hiding it? I guess I'll just wait and see, leave it a few dates, see if it's actually going anywhere and then drop it in casually.

My date: "I have two cats."Me: "How interesting. I have a chronic progressive wasting disease."

Wednesday, 21 July 2010

I don't have anything in particular to post about today so here's some random reflections:

* I spent the weekend down south at a Theme Park with 3 friends. It was aaaawesome!

* I have a crush on someone at my yoga class. Wondering whether if I ask them out and they say no it'll mean I'll have to stop going to the class out of pure embarassment?!

* I had a STUPID day today. I had to drive through to Edinburgh super early and film something, half of which went fine and then my microphone went crazy and conked out. Really frustrating. Then a part of the photography equipment conked out! Then I got stuck in a traffic jam on the way home. I should feel annoyed but the older I get the more I find this stuff funny.

* My feet are suspicious. They feel a bit dodgy but not dodgy enough to say they're flaring. I walked about all weekend and it was fine but I can just feel a tiny bit of that jabby 'something' in the balls and it's been there about 2 weeks. Go away, please. You're annoying me, I have NO TIME FOR SORE FEET or anything else for that matter! So that's you told, feet - NO FLARING OR ELSE.

* I need a large glass of vino, thankfully my friend is making me dinner tonight. Woo hoo.

Thursday, 15 July 2010

I attended an NHS organised focus group tonight led by a doctor, talking to arthritis patients and trying to find out their opinions on general practitioners and their care.

It was quite interesting, the group was for young people and there were 4 of us there, the other 3 had had their conditions since childhood so had a lot of experiences with the medical system, unlike myself. Initially the topic was meant to be GPs and their 'pain management' techniques, but what soon came out was that most people were more concerned about the GPs neglect of the psychological aspects of arthritis. Again and again, people made the point that doctors don't tend to discuss the further reprecussions of arthritis on the mind, relationships and the effect the disease has on day to day life. A point I made was that no one in primary care, or at the rheumatology clinic has offered me any sort of emotional guidance or counselling. I don't want to diss my doc here, I love my rheumy, and I know time/money is tight. But they didn't even point me towards Arthrits Care or any other charity. There's posters up on the wall, but no one encouraged me to call or even asked me how I'm coping emotionally with the diagnosis.

It was also quite sad to hear some people's stories, like one girl who was my age (24) and had been diagnosed with ankylosing spondylitis last year but she'd had it her whole life and no doctor would ever believe her. She'd spent her childhood in terrible pain, going from doctor to doctor and being told she was 'making it up', until an MRI finally showed so much damage in her spine that it's now irreversible.

Anyway.. it was very interesting and I hope that the piece of research doesn't just get buried under lots of papers on someone's desk.

I got a £15 shopping voucher too, thanks NHS! I do fund you, after all.

Tuesday, 13 July 2010

This happened with the sulfa too (I mean aside from my WBC melting away I felt fab).. Surely my luck can't hold out much longer. I'm expecting to grow a few tentacles or possibly a tail by the weekend. I'll keep you posted...

Friday, 9 July 2010

I had a 2 week break and my bloods went back to normal. Then Dr A put me on it again for 3 days and we did bloods yesterday. My white blood cell count's dropped by a point, so she's almost sure it's the meds.

I'm pretty bummed out about my stupid bad luck. I'll try and snap out of it and focus on the fact that apart from one slightly dodgy thumb I feel really well so I shouldn't waste my 'feeling well' time being depressed about a treatment failure. And I know that worrying about the future is pointless...but why oh why do I still do it??

Maybe I'll go watch the new Twilight movie, that'll make me laugh. The whole thing is sooo bad but for some reason I've seen them all. And no, I don't secretly fancy teenage vampires. Or warewolves.

Saturday, 3 July 2010

I just finished reading Martin Millar's 'The Good Fairies of New York'. It was awesome and I thoroughly recommend it. It's about 2 mad Scottish fairies who are on the run from their fairy clan for destroying traditional Scottish fairy music and playing New York Dolls songs on their bagpipes. They somehow end up in New York and befriend two lonely young people living in the city. One's the fat rude slob Dinny and the other is the lovely pretty Kerry who suffers from Crohn's disease.

It is as mental as it sounds and definitely not a children's tale as it's about isolation, sex, drugs and the ghosts of the New York Dolls.

It also portrays Kerry's emotional struggle with her autoimmune disease very well and it really spoke to me.

About Me

I like taking pictures, riding around on my bike and listening to music on my headphones with the lights out. I live in Glasgow and love the city. I also have RA and I blog about that, although I try not to let it get me down. That's it really.. Oh and I love squirrels.